Characterizing Episodes of Lucidity in Dementia: Observational and Applied Computational Linguistics Approaches

Abstract Though episodes of lucidity (EL) in Alzheimer’s disease and related dementia (ADRD), reportedly more common near end of life, have significant implications for care, they are poorly understood due to underdeveloped methodological approaches for capturing and measuring these events. This prospective observational study addresses these gaps through audiovisual observation among persons with ADRD surrounding end of life to inform data-driven definitions for EL and distinguish EL from routine fluctuations in ADRD. Audiovisual observation is well-suited to addressing gaps in operationalization of EL, providing an objective data source to assess verbal and nonverbal communication, the primary means through which EL are evidenced. Our study is designed to establish optimal procedures for capturing audiovisual data of targeted populations and timeframes to maximize opportunities for detecting EL. Operationalization of EL will be informed by computational linguistic and behavioral-event coding of linguistic and non-linguistic communication features of EL and associated temporal qualities.

and so difficult to measure. A working definition of PL has been formulated from case reports, but aspects of this definition remain vague. I argue that this vagueness challenges the measurement of PL and the generalizability of study results. I conclude by proposing ways to address these problems.

EARLY DESCRIPTIONS OF FAMILY CAREGIVERS' EXPERIENCES WITH UNEXPECTED LUCIDITY
Kyungmin Kim, 1 Joan Griffin, 2 Lauren Bangerter, 3 Virginia Biggar, 4 Dawn Finnie, 5 Theresa Frangiosa, 4 Joseph Gaugler, 6 and Maria Lapid, 7 1. Seoul National University,Seoul,Republic of Korea,2. Mayo Clinic College of Medicine,Rochester,Minnesota,United States,3. UnitedHealth Group,Minnetonka,Minnesota,United States,4. UsAgainstAlzheimer's,Washington,District of Columbia,United States,5. Mayo Clinic,Rocheste,Minnesota,United States,6. University of Minnesota,Minneapolis,Minnesota,United States,7. Mayo Clinic,Rochester,Minnesota,United States To develop an operational definition of and typologies for episodes of lucidity (EL), we conducted a cross-sectional study of former/current family caregivers from UsAgainstAlzheimer's A_LIST (N = 538). More than 60% of caregivers (n = 294, 62%) reported witnessing EL with their care recipient over the course of their dementia. Most episodes happened in late stages of dementia (71%). Only 10% happened within 7 days before death. The majority of episodes (71%) lasted <30 minutes. About half the episodes were characterized by uncharacteristic speech and communication. Caregivers perceived these experiences positively (M = 4.10; range = 1-5), but also expressed desire to know why/when EL occurs and how to best respond to it. Data will be used to refine definitions and typologies, and then a prospective, demographically diverse survey will be administered to family caregivers to assess predictors of EL, linking EL to caregiver well-being and bereavement response.

CHARACTERIZING EPISODES OF LUCIDITY IN DEMENTIA: OBSERVATIONAL AND APPLIED COMPUTATIONAL LINGUISTICS APPROACHES
Andrea Gilmore Bykovskyi, 1 Kim Mueller, 1 Nicole Werner, 2 Erica Smith, 1 Laura Block, 1 and Clark Benson, 1 1. University of Madison,Wisconsin,United States,2. Industrial and Systems Engineering,Madison,Wisconsin,United States Though episodes of lucidity (EL) in Alzheimer's disease and related dementia (ADRD), reportedly more common near end of life, have significant implications for care, they are poorly understood due to underdeveloped methodological approaches for capturing and measuring these events. This prospective observational study addresses these gaps through audiovisual observation among persons with ADRD surrounding end of life to inform data-driven definitions for EL and distinguish EL from routine fluctuations in ADRD. Audiovisual observation is well-suited to addressing gaps in operationalization of EL, providing an objective data source to assess verbal and nonverbal communication, the primary means through which EL are evidenced. Our study is designed to establish optimal procedures for capturing audiovisual data of targeted populations and timeframes to maximize opportunities for detecting EL. Operationalization of EL will be informed by computational linguistic and behavioral-event coding of linguistic and non-linguistic communication features of EL and associated temporal qualities.

DEVELOPMENT OF A STAFF INFORMANT MEASURE OF LUCIDITY
Jeanne Teresi, 1 José Luchsinger, 2 Mildred Ramirez, 3 Stephanie Silver, 3 Davangere Devanand, 4 Julie Ellis, 5 Gabriel Boratgis, 3 and Paloma Gonzalez-Lopez, 3 1. Research Division,HHAR,Riverdale,New York,United States,2. Columbia University,New York,New York,United States,3. Research Division,Hebrew Home at Riverdale by RiverSpring Health,Riverdale,New York,United States,4. Columbia University Irving Medical Center,New York,New York,United States,5. La Trobe University,Nursing and Midwifery,Bundoora,Victoria,Australia Lucidity Measure Development: An existing questionnaire measuring lucidity length, degree, content, coinciding circumstances, and time from lucid episode to death was expanded to include time of day, expressive and receptive communication and speech the month prior to and during the lucid event. Pilot Study: 33 interviews with staff were conducted; 73% reported ever witnessing paradoxical lucidity. Among 29 events reported, 31% lasted several days, 20.7%, 1 day, and 24.1% less. In 78.6% the patient engaged in unexpected activity. 20% died within 3 days and 17% within 3 months after the event. Qualitative Analyses: To refine the measure, 10 family caregivers and 20 LTSS staff caregivers completed a web-based focus-group type exercise using QualtricsXM. A content-thematic analysis with an inductive approach was applied to make qualitative inferences by analyzing the meaning and semantic relationship of words, phrases, and concepts. Using the reduction method of selection, conceptual content categories will be developed.

ANNUAL REVIEW OF GERONTOLOGY AND GERIATRICS SYMPOSIUM: BLACK OLDER ADULTS IN THE ERA OF BLACK LIVES MATTER
Chair: Jessica Kelley Co-Chair: Roland Thorpe, Jr.

Discussant: Linda Chatters
Our renewed urgency and engagement in a national dialogue on issues of systemic racism and racial justice provides a much-needed opportunity to expand the discourses, perspectives, and practices used in the study of aging. This symposium features contributions from the 2021 (Vol 41) Annual Review of Gerontology and Geriatrics focusing on the continued development and maturation of scholarship on the lives of older Black Americans. Building on the scholarship and research contributions of prior generations of eminent African American gerontologists, the volume asks: "What do we know about the lived experience of Black older adults and what is there still to be learned?" The contributing authors continue a tradition of research that examines the life histories and contemporary experiences of older Black adults within their relevant social and personal contexts. Symposium presenters from a range of social science fields (sociology, psychology, social work), explore aspects of physical health, stress, cognition, and social well-being in the context of intersecting social dimensions of marriage, family, gender, and neighborhood.

CANCER AND CAREGIVING AMONG OLDER BLACK AMERICANS AND FAMILIES Katrina Ellis, University of Michigan, ANN ARBOR, Michigan, United States
Cancer disproportionately affects Black Americans and consequently, their families. In addition, cancer is often just one of the significant health concerns facing Black families at any one time. Research on family support after an adult cancer diagnosis overwhelmingly focuses on a single (i.e., primary) caregiver and spousal family caregivers, limiting understanding of the complexity of caregiving within family systems facing multiple health challenges. This presentation presents a framework for a broader focus on the role of family systems in providing cancer care, highlighting both the unique strengths and challenges facing Black families who provide care. A family comorbidity lens is used to underscore the need to better understand the nature and impact of concurrent health challenges within families. Ultimately, this perspective reflects the lived experiences of older Black adults and their families after a cancer diagnosis and has implications for future research and interventions to address health issues interdependently.

GENDER, STRESS, AND MENTAL HEALTH AMONG OLDER AFRICAN AMERICANS Christy Erving, Vanderbilt University, Nashville, Tennessee, United States
Across studies on social stress exposure on the mental health of older African Americans, most investigate singular stress exposures (discrimination). Furthermore, this research rarely assesses gender differences in the psychological effects of specific stress exposures. I use the National Survey of American of Life to assess: (1) gendered patterns of stress exposure among older African Americans; (2) gendered nuances in the individual, collective, and cumulative effects of stress exposure on mental health. I find gender patterns of stress exposure differed by type of stressor. Women and men shared some stress predictors of mental health (everyday discrimination). Other stress predictors were specific to women (health-related mobility challenges) or to men (perceived neighborhood crime). Study findings challenge gerontologists to consider how race-gender groups are at distinct risks for stressors that elicit poor mental health and provide a call for tailored strategies for improving the psychological health of African American women and men. There remains a lack of knowledge on marital satisfaction of African Americans generally, but particularly older African Americans. In addition, only a handful of studies investigate satisfaction among couples who are unmarried. With data from the National Survey of American Life, this